Today, as a family, we’re releasing balloons and celebrating the too short life of a sweet little boy named Carter. Carter is a 3 year old with Williams Syndrome who became an angel last week very suddenly and unexpectedly. We didn’t know Carter in our real lives. I am Facebook friends with his mom, Airelle, and we connected through a closed support group for parents and caregivers of individuals with WS.
I’ve been struggling with how to share this because it feels disingenuous to share the grief of someone I am not close to. When I joined Facebook years ago I never intended to be “friends” with people I didn’t know. It was a way of staying connected with family and friends, sharing our daily moments to defy the distance created by life or land. And it’s been wonderful for that. I just love being able to take a peek when I’m wondering what our niece and nephews are up to over in England. I love sharing my children, and cakes and what’s for dinner. I love that I get glimpses into the lives of friends from my past.
But when Norah was diagnosed with WS, social networking changed for me. A fellow local WS mom who was generously offering support by phone invited me to a closed support group on Facebook. And 2 years later I find my friends list is almost half made up of people I’ve never met. But we have a common thread and many of them feel like family. I see Norah in the faces of so many kids whose photos grace my newsfeed. When I watch videos their movements and sounds are so familiar.
I find myself regularly surprised at the level of emotion that rises to the surface when someone in our WS community shares a heartache or a triumph. A little girl who’s been struggling to walk takes her first steps and I rejoice, get chill bumps. A little girl goes home after a very scary and complicated recovery from open heart surgery, a lump in my throat, a tear, a shudder of relief. A child is lost, sadness, nausea, fog. I cannot fathom it. As my very wise brother-in-law says, “don’t try”.
So, I will not try to understand Airelle’s grief. But today, as a family, we give thought to her son, Carter. We each relate in our own way. Norah smiles at Carter’s picture, scribbles with some markers on a note to him, enjoys the balloons. Charlie tries to eat one. I choose a picture of Carter and Airelle together for my note because I am relating as a mom. Stu as a father. We let our balloons go and watch them get smaller as they drift towards the clouds. We get on with our day with a whisper of sadness for Carter’s loss following us throughout. It is our luxury to get frustrated when both kids refuse to nap. To get annoyed by an achy knee. To be fed up with picking up toys and wiping hineys. It is our luxury. I wish it were Airelle’s too.